The Digital Health Manifesto

The Medical Futurist 6 February 2018

Digital Health is a cultural transformation, not just a set of new technologies. Written by e-Patient Dave deBronkart and Dr. Bertalan Meskó.

Preamble

The doctor-patient relationship in healthcare is on the verge of a paradigm shift not seen for centuries – a paradigm shift in Thomas Kuhn’s sense in his 1962 classic, The Structure of Scientific Revolutions. Healthcare and medicine are fundamentally different from physical sciences, but Kuhn’s point about the sociological transition is universal. He mentioned that “perhaps science does not develop by the accumulation of individual discoveries and inventions”, but that “discovery commences with the awareness of anomaly, i.e., with the recognition that nature has somehow violated the paradigm-induced expectations that govern normal science”.

We are at the point of detecting such anomalies in healthcare. For centuries the dominant paradigm has been that patients do not and cannot know what needs to be done (or more precisely cannot know anything worth knowing), yet in story after story, patients today are bringing real value to their own cases, thus “violating the paradigm-induced expectations that govern” the culture of medicine.

Kuhn wrote that when too many anomalies accumulate, a field goes into crisis until a new paradigm is developed and accepted. We assert that this crisis stage has arrived, but as often happens, the causes of the anomalies are poorly understood, which leads to confusion and confused reporting. No new paradigm can arise, letting the field advance, while confusion reigns.

We, therefore, issue this Digital Health Manifesto.

We assert that the current anomalies are caused by two breakthroughs in the genesis and flow of information: access to knowledge, and digital tools which enable – but do not alone cause – better health through situational awareness and behavior change.

Illustration by Scott Garrett/Source: The Guardian.

Around the world, many express frustrations at healthcare’s array of challenges: the unsustainability of many national systems, the worldwide doctor and nurse shortages and the spiking numbers of “diseases of civilization” such as diabetes and obesity. Patients, medical professionals, care providers, pharma companies, technology start-ups, regulatory agencies and all other stakeholders in health and care perceive the winds of change. But digital health has produced mixed results, putting the field prematurely in the “trough of disillusionment” defined by Gartner Group.

Players in the investment sector, who would like to participate in improvements, recognize the technological tsunami and rapid changes in other markets such as manufacturing, transportation, and energy, but are vexed by healthcare’s inability to adopt. That’s a clear sign of looming trouble: as Jack Welch said, “When the rate of change inside an institution is slower than the rate of change outside, the end is in sight.” He said it about corporations, but it’s just as true about whole industries: it’s a key mechanism by which a new technology can disrupt an entire industry.

Medicine is too important to let this persist; too much is at stake for the future of humanity. Healthcare must re-optimize digitally, as other industries have. Yet observers are equally vexed by the wildly unpredictable results produced by digital health interventions.

In need of two perspectives

e-Patient Dave and I are both keynote speakers, who have attended a thousand events.

We represent two different perspectives: I’m a medical doctor and Dave is an empowered survivor of Stage IV cancer (@ePatientDave) with a high-tech background. As we are invited to conferences, debates, conversations all over the globe, we get to know plenty of stakeholders in different countries and various cultures with a wide range of issues. Since culture lives in conversations, there’s no better place to detect universal patterns than in hundreds of such events.

We need to spot the disconnects in the thinking of influential stakeholders regarding the future, and create bridges and conceptualize the big picture to allow us into a better future. A future where old hierarchies tumble down, the paternalistic patient-doctor relationship is no longer needed and disruptive technologies enable the democratization of care by democratizing knowledge. A future where all these are in place due to cultural transformation facilitated by disruptive technologies. In short, a future where digital health has fulfilled its potential.

This manifesto presents six declarations we believe are essential for correctly understanding what is and isn’t happening in digital health, hoping that it will help patients, physicians, and policymakers adopt new technologies easier.

Manifesto

1) It’s a cultural transformation – not just technology

Despite popular belief, disruptive technologies cannot bring change on their own. Social media, artificial intelligence, robotics, 3D printing, virtual or augmented reality and health sensors have no effect whatsoever without a change in stakeholders’ attitude and the structure of the system.

Disruptive technologies do, however, give participants a chance to redefine their roles. Modern doctors must stop saying “stay off the internet” and accept that their patients already do look things up online. As Dave says in speeches, “Googling is a sign of an engaged patient!” Doctors should extend their hard-earned expertise into the tools and channels where motivated patients live, or they risk becoming irrelevant – how ironic that would be. Recommend trustworthy sites and apps; be available (or have staff available) for questions and concerns; welcome the engagement.

Another dimension arriving, but not always welcome, is the reality that patients are gaining increasing data at home, continuing the time-honored trends of home thermometers, home pregnancy tests, insulin test strips, CGMs etc. We can barely imagine the next step in which preliminary diagnoses and prescriptions may be possible. Virtual reality or augmented reality could bring doctors to patients’ homes (as telemedicine already does), which will be wonderful for the elderly or remote communities.

But as long as the culture of medicine resists doing things differently, progress will be impeded. We must not construe shortfalls as the fault of technology if the culture hasn’t changed.

2) It’s about behavior change

In his book Let Patients Help, Dave wrote that “Information alone doesn’t change behavior.”

When he was diagnosed with pre-Type 2 diabetes, he bought a fitness wristband, and in the first six weeks his weight went up: in the absence of change, the data from his wrist did no good at all! Does this prove wristbands are useless? No: he got into the evidence-based Diabetes Prevention Program, where encouragement and coaching coaxed him into eating better (with the help of an app) and becoming more active, with months of coaching reinforcement and strong support at home. Ultimately he lost 40 pounds and became a runner in his sixties. Technology enabled behavior change, but technology alone was not sufficient.

Researchers in Singapore carried out an interesting study for measuring the effect of healthcare trackers on people’s motivations. The findings show that regardless of physical activity levels of participants before the study began, activity trackers alone or when combined with rewards designated for charity did not increase activity levels. In fact, nearly half of participants were no longer wearing their trackers by the six-month assessment period. Technology cannot substitute willpower and action, cannot change people from passive yesmen into proactive leaders if they don’t want to.

3) New information enables better performance and better questions

Every digital technology is having an unprecedented, paradigm-altering effect on who can know what, which alters the possible future. Vast amounts of easily accessible knowledge mean people are informed better, which enables them to perform better – doctors as well as patients.

It has to be acknowledged that with the rise of digital technologies and the dissemination of knowledge beyond the ivory tower, patients today have a lot more to offer to doctors than before. Very soon, the old paradigm “medicine is hard; people without medical training have nothing to offer” will be obsolete, but we must work actively to change it among both patients and clinicians: it prevents most patients from speaking up, asking questions, telling their doctors their opinions, feelings, and experiences – and even if they do, it prevents most doctors from recognizing the possible value and listening.

As online communities with knowledge sharing and camaraderie urge more and more patients to speak up in their own cases and for their own interests, medical professionals will also have the push to perform better.

It’s essential for digital health observers to recognize both these points: data truly enables new levels of performance, but the information alone won’t do it.

4) It’s about what works for the patient

Any tool has value only in the context of an objective and a plan. Yet, no plan is of interest unless it suits the patient’s needs. Thus, an essential part of our cultural transformation is to shift the locus of control: we must shift from “doctor knows best” to “what are your goals for your care?”

For a digital health tool to be attractive, it must serve a patient’s goals – self-defined, not imposed by authority – and the user/patient must believe change is possible. News writers like to declare that digital health or behavioral interventions have failed, but we have never seen an article in which the patient’s activation level, motivation, or readiness for change has been reported too. This is a failure to diagnose before prescribing, as surely as if an antibiotic were prescribed without knowing which bacteria the patient has.

5) The future of care includes networked access to information and empathy

Tech pioneer Vinton Cerf, often referred to as “the father of the Internet,” said that the online platform “is not merely a technology but a new way of cooperating, sharing, and caring”. The World Wide Web enables the interconnection of people and their knowledge, whether it’s about DIY cornices or insulin pumps. The availability of vast amounts of medical information demolished the old – yet persistent – attitude that medical knowledge resides only in the minds of the best doctors and is passed down through the hierarchy. Anyone with an internet connection can access relevant and useful medical information, can learn about their own case and ask questions. As with devices, the information doesn’t guarantee change but enables it. To deny this new possibility is to be a dinosaur. We must instead learn to use it, leverage it. (Remember what Welch said.)

Some patients have even found the key to healing online. Janet Freeman-Daily, a stage IV lung cancer patient whose doctors had run out of options, welcomed her contribution when she joined a patient community and discovered a little-known mutation that ultimately led to her achieving the coveted “no evidence of disease” status.

Connectivity not only means access to knowledge but also to others with the same need. Patients can often feel isolated if nobody they know is going through the same journey, but they often find it in online patient communities. Health researcher Susannah Fox’s excellent video on peer-to-peer healthcare shows that even a small community may have better health information than most individuals and some doctors. Further, they can provide empathy and the feeling of belonging and understanding and are beyond a doctor’s sensible scope.

6) Think critically: read beyond the headlines.

A real peril for observers and participants is inept reporting amplified by clickbait headlines.

“Will fitness wearables soon diagnose by design, not by chance?” asked Engadget a while ago. No, they won’t, we responded in our LinkedIn piece. Both of us – doctor and patient – got frustrated because the tech website’s writers revealed they don’t know the difference between a single symptom (with no context at all) and a medical diagnosis. Medicine is complicated! A doctor could be disciplined for such an ignorant mistake, and observers who read such things will be just as ill-informed and unable to do their work.

The root problem is that many digital health writers know plenty about apps but nothing about medicine. A secondary problem is a resulting sense that digital health is for idiots: imagine a trusting reader (you?) who goes to a doctor and mentions the article. The doctor concludes that e-health is stupid and the patient is naive.

We must think critically.

Engadget is not alone. The widely trusted business sites TechCrunch and BusinessInsider were wildly incorrect in their coverage of Apple’s January announcement that the Health app will be able to download a small set of simple measurements (blood pressure, blood tests etc.). That’s a tiny part of a patient’s medical record (as any savvy patient knows), but TechCrunch called it “all your medical records” and BusinessInsider enthused “complete medical records.” This not only makes patients and the digital community look like idiots; it blocks thinking professionals from contemplating what actually has been announced, so they can better understand what is newly possible.

Health news sites and tech magazines have a lot of responsibility, so they should act accordingly. As for patients and doctors as news-consuming users themselves, they should be vigilant about online content and attempt to see through the filter of current reporting. Here is some help how to do that!

Conclusion

No manifesto will by itself change a two-thousand-year-old system, any more than Martin Luther’s 95 theses did. Establishments die hard: 100 years ago, in 1918, Max Planck was awarded the Nobel Prize in physics, and in his Scientific Autobiography he talked about the adoption of change by any establishment:

A new scientific truth does not win adoption by convincing its opponents and making them see the light, but because its opponents eventually die.

A manifesto can, though, kindle new thinking among those who do see the light. Planck continued:

… and a new generation comes up that is familiar with it.

It is to these new thinkers (of any age) that we address this manifesto. There is much more to be said, but these declarations form the foundation without which nothing more could stand as we present it.

It is essential that health and care achieve their potential, which cannot be done based on false understandings. This is why I asked Dave to contribute with his revolutionary ideas and vision. Whenever I saw him speak, there was a standing ovation. If this article helps you see what Dave and I independently observed in our travels despite our completely different backgrounds, we will be grateful.